Tuesday, October 20, 2009

[Written and delivered at the 2009 Pittsburgh Walk for Children with Apraxia of Speech]

by Sue Freiburger

When I look at Sean, it is hard to believe how far we have come in the past six years. He has grown in so many ways and achieved so much more than we had ever hoped for.

I want to share our story with the parents here with young children with apraxia. Sean’s apraxia was so severe that after a year of speech therapy thru early intervention, the only sound we had was “eh”. We discovered CASANA when Sean was around two and a half years old and began really aggressively pursuing intensive specialized therapy. We came to Pittsburgh to have Dave Hammer evaluate Sean and confirm the diagnosis of apraxia. My expectation was that we would leave with a treatment plan and a new direction. I was very hopeful that this would be our turning point.

After a two day evaluation, Dave sat down with us to review his results. The results were not good. Dave said that he was unable to stimulate any speech production from Sean and that at best, he could confirm a suspected severe case of childhood apraxia of speech, with a suspected underlying genetic condition. His prognosis of Sean every becoming a verbal communicator was poor. I held back my tears as I felt my world collapse beneath me. If an expert like Dave didn’t think that Sean was likely to ever be able to talk, where would we go from here?

As we got into out car, the tears started to flow. I knew that I had to pull myself together before we got back to the hotel room where my mom waited with our other two children. Eric had spotted a garden center across from the speech therapy center and thought that could be a diversion for both me and my mother. He suggested I pick out a special plant for her to thank her for coming to Pittsburgh and helping us out during Sean’s evaluation. I was drawn to a small lily plant that was very fragrant. I could explain my red eyes away by saying the flowers had aggravated my allergies...

My mother took the plant home to NY and planted it in a special spot in her front garden. We took Sean back to VA and began our search for a speech therapist who could offer us the intensive specialized therapy that Sean needed. We also began to investigate augmentive communication devices.

It was a long year, with many visits to specialists, long battles with the school system, and about nine hours of private therapies a week, but the following summer, Sean was successfully communicating using his Dynavox Augmentive Communicative Device. That June got a call from my mother telling me that the “Mr. Hammer” lily was in full bloom and it was spectacular.

Due my husband’s job transfer, we ended up moving to Pittsburgh that summer. Unfortunately, there was a long waiting list to get into speech therapy with Dave Hammer, but we kept plugging away. Sean slowly began to find his voice, starting with "Polamalu" when he was around four and half years old and is now quite the talker (and still a huge Steelers fan!)! After almost a year, Sean was able to start therapy with Dave Hammer and Dave couldn’t believe that this was the same little boy he had evaluated almost two years ago. We worked together as a team with Mr. Hammer and Sean continued to thrive. The “Mr. Hammer” lily is around eight feet tall and continues to remind us how far we have come from the day when we felt that all hope was gone.

Over the years, I have spent many hours in my garden, using it as my therapy to work out my frustrations with the long slow process of helping Sean to find his voice. Many of my plants have been watered with tears, but each year, they come back stronger and bigger than ever. Dave Hammer sometimes wonders if he should have given us such a grim prognosis at the evaluation, but we both know that it was a fair evaluation. Without his honest assessment, we never would have know just how hard we would have to work to help Sean find his voice. We would have accepted the school systems assessment that a three year old couldn’t use a high-tech augmentative communication device. We would have waited and waited for the words to come. The path we had to take was a difficult one, the work was hard, but Dave has given us a gift that we can never repay. Sean now has a voice and I have an enormous garden! We dug up a piece of that “Mr. Hammer” lily and split it – a piece of it to grow in my garden and a piece for Mr. Hammer to plant in his yard.

I collected seeds from the flowers in my garden to share with the other parents today. Scatter these in your garden to remind you that from small seeds, beautiful and wonderful things can grow. Let your tears flow on the days when things are tough, but hold on to hope.

Wednesday, September 30, 2009

In the beginning hours of daylight on Sunday morning, September 20, 2009, a brave and driven group of men hopped on their bicycles to begin a 585-mile bike ride to raise funds and awareness for childhood apraxia of speech. Being the parent of a child with apraxia, Mr. Tom Welge made a commitment to bring support to a cause very close to his heart.

The students and faculty in the Department of Communication Sciences and Disorders at Augustana College in Rock Island, Illinois wanted to welcome Mr. Welge and his crew to our campus for fun, food, and a little time away from their already-muddy bicycles. Mr. Welge’s cause is also one of our own causes and we had a desire to show our support. Students welcomed the Mississippi River Apraxia Challenge (MAC) Riders and presented them with not one—but two—checks. With the help of many students, $600 was raised to donate to CASANA in honor of Mr. Welge and his crew’s expedition. Augustana students were not the only ones to donate; the Benisch’s (whose young son attend the Augustana Center for Speech, Language, and Hearing) also raised $510 for CASANA.

After receiving our donations, Mr. Welge asked if he could speak to us and began to warm each of our hearts by providing thanks and appreciation to professors, advice and support for parents, and a certain validation for each student standing in the crowd. Mr. Welge thanked the 100+ Augustana CSD majors not only for the picnic and donation, but also for choosing a self-less vocation. His gratitude (for our participation in the MAC Ride ‘09 event and our career choice of CSD) was expressed as he thanked the students, mentioning his own family’s positive experience with speech-language pathologists. As he began to well with tears, so did many of us. Mr. Welge generously expressed his excitement of having the Augie students standing there on the picnic lawn as representatives of the upcoming generation of professionals in the field of CSD.

Making decisions that affect the rest of your life is daunting; choosing a major and future profession is no different. When I (Lindsay Croegaert) began my first CSD class at Augustana College, I realized my interest in the field. Despite my passion for CSD, worry began seeping into my mind: What if there is a better profession out there for me? How will I ever know whether I chose the right career path? Although I felt anxiety over choosing CSD as my one and only major, I was still excited to finally start my classes in the department. I jumped at the first service-learning project opportunity—MAC Ride ’09. During Mr. Welge’s emotional speech expressing his thanks and gratitude to the students, my doubts disappeared. I was no longer worried about my intended major—I no longer had any reservations. In addition to completely removing doubt about my choice as a major here at Augustana, Mr. Welge also reminded me that the education I’m currently receiving isn’t just about earning a degree. My preparation and education here at Augustana are stepping stones that will help me help others. The career and the life that I’ve chosen for myself benefits so many more people than just me. I can’t thank Mr. Welge enough for his thoughts and words. He and his team inspired and validated each of us through their motivational message more than they’ll ever know.

I (Ellen Groh) am a senior this year at Augustana. Amid the stress of finishing my undergraduate degree and applying for graduate school, I rarely am able to imagine my life outside the world of education. Yet listening to Mr. Welge speak, I became able to envision the life I will lead when my last three years of school have been completed. Mr. Welge helped remind me how powerful my job will be as a speech-language pathologist. I will care, teach, love, and help individuals every single day in my profession. After meeting the MAC Riders, I again could see the bigger picture. We really will make a difference—students, SLPs, families, professors, and professionals working together as one. The MAC Ride event helped to instill the idea that we are one big team, reaching for an even bigger goal. As CASANA’s motto states, “Every child deserves a voice.” I am touched and truly blessed to be part of a team that makes the voices of children heard.

Monday, August 10, 2009

[A letter from Emilee's parents and one that brought tears to our eyes!]

Through the years we have enjoyed reading the success stories of fellow CASANA families. At the risk of bragging (Why not? We’re proud parents. That’s our job!), we would like to share our own story about our daughter, Emilee…

In 1998 at age 3, Emilee was first diagnosed with Apraxia. In the fall of 2005 at age 11, we watched with great anxiety as Emilee descended into the jungle of the middle school. Her learning differences, the academics, social issues, and even being able to open her locker, were all things that kept us up at night wondering how she was ever going to survive the fall of 6th grade, let alone the whole middle school experience.

Well, through more hard work than we could have ever imagined, along with the help of some truly wonderful teachers, aids, her family, and a great (small) group of friends, not only did she survive, she THRIVED. At her 8th grade “graduation” last month, we learned that Emilee was one of only 15 students in a class of 168 to earn the President's Award for Educational Excellence for maintaining at least an “A-“ average in every subject for the entire 3 years of middle school. In addition, she was one of 4 girls nominated by her peers and teachers an award, which is given each year to the outstanding boy and girl in the 8th grade. While she was certainly not one of the more “popular” students, her peers and teachers really admired her incredible work ethic and kindness to others. Needless to say, we could not be more proud of her.

For ninth grade, Emilee will be headed to a small private school just outside of Boston. While they do not offer “services” per se, they specialize in a “multiple intelligences” approach to teaching with small class sizes and a learning center to help guide the students along. It looks like it is going to be a great fit and Emilee is very excited.

Our message to those just starting down the path with a child with CAS would be to never give up hope. While this difficult journey to “Holland” (http://www.our-kids.org/Archives/Holland.html) is far from over, there are wonderful stops to enjoy along the way. You just have to watch for them, because you never know when or where they will pop up. Emilee never ceases to amaze us: from speaking when it was unclear how well she would ever speak, to riding a bike when it looked like a lost cause, to thriving in middle school, when we were worried if she would ever survive it. We are looking forward to seeing what the next four years of the journey will bring.

Monday, August 3, 2009

Question:My son has apraxia and memory issues. Is there a way of learning the differences between spelling for a sound like or, ore, oar, au, oar, and aw? My son gets so confused and frustrated. The other day he spelt 'caught' as 'cawght.'

No single approach works for all children, especially for spelling. There are programs that address teacher training for high quality instruction and programs for student intervention from research-based models ofachievement. Teachers must understand individual learners and differentiate instruction to target their identified needs. Quality programs to teach beginning reading should also teach beginning writing with related spelling patterns (like those described in the question), and build upon the foundational belief about the connection to early literacy development. In other words, achievement in reading, writing, and spelling is dependent upon high quality explicit instruction not only in reading and writing but also with attention to the underlying early literacy components of listening and speaking, including possible deficits during that stage of development. Students who have experienced delay in or difficulty with sound play and oral language often require additional intervention with explicit instruction to learn the language arts in their written form.

LETRS (Language Essentials for Teachers of Reading and Spelling) is based upon the textbook and related workbook, Speech to Print by Louisa Cook Moats from Sopris West Educational Services. This professionaldevelopment program for teachers of reading, writing, speaking and listening is designed to teach teachers the elements of delivering successful instruction of English "language arts." English is a "deep language" that spells both for meaning and phonics, so spelling can be a challenge for students. Moats describes, "The teacher who understands language and how children are using it can give clear, accurate, and organized information about sounds, words, and sentences. The teacher who knows language will understand why students say and write the puzzling things that they do and will be able to judge what a particular student knows and needs to know about the printed word. Literacy is an achievement that rests on all levels of linguistic processing, from the elemental sounds to the most overarching structures of text."

SpellRead Phonological Auditory Training, acquired by Kaplan in 2006, and generally used with students in grades 2-12 who are still having difficulty with text is "an innovative method for helping struggling students master the critical skills of reading," (which includes spelling). Instruction is delivered by a trained teacher to small groups during a one-hour pull-out across a set progression of lessons to an end point. The largest emphasis for instruction in the program used with grade 3-5 students is on the word level for reading. Smaller instructional sections are dedicated to comprehending text and writing. This "writing" piece focuses more on student writing production (including spelling) than on content. A June 2006 press release describes the program like this: "The SpellRead program helps students to recognize and manipulate sounds in the English language, then to transfer those skills to reading text and eventually to writing. It is generally administered in schools in grades two through high school during a daily one-hour pull-out program led by a specially trained teacher."

According to a review from the Florida Center for Reading Research, "The SpellRead P.A.T. program, when implemented properly, can produce significant and substantial effects on reading skill for children ranging in age from grade one through grade six. Results from several clinical samples support the finding that the SpellRead program can provide instruction that is sufficiently powerful to normalize most of the reading skills of struggling readers older than 12 years of age." (FCRR report on SpellRead P.A.T., November 2003)

"The all new Fountas and Pinnell Leveled Literacy Intervention (by Irene Fountas and Gay Su Pinnell) has been developed in response to the demands of teachers and administrators for a powerful, scientifically-based early intervention program that can prevent literacy difficulties before they turn into long-term challenges." ([http://www.fountasandpinnellleveledliteracyintervention.com/aboutLLI.asp] http://www.fountasandpinnellleveledliteracyintervention.com/aboutLLI.asp)It is a systematic supplementary program designed for small group instruction of young children from Pre-K to Grade 3 that includes close monitoring to work toward benchmark acceleration across prescribed beginning to end points. Learning goals are achieved through high quality teaching with a solid foundation in alphabet knowledge, phonemic awareness, phonics, conventions of print, high frequency words, syntax, fluency, and comprehension, especially for children who are achieving below grade-level competency. Logically found within such a program design, is a spelling-related goal described as follows from the LLI kindergarten level synopsis: "Using letters and sounds to solve words. As children learn letter-sound relationships, they begin to apply them to solve simple words. LLI provides a great deal of systematic instruction to help children understand how words are constructed using letters and letter patterns. They read and write words that are in continuous text."

In the end, the Report of the National Reading Panel, p 2-99, may describe it best: "Learning to read is a complex task for beginners. They must coordinate many cognitive processes to read accurately and fluently. Readers must be able to apply their alphabetic knowledge to decode unfamiliar words and to remember how to read words they have read before. When reading connected text, they must construct sentence meanings and retain them in memory as they move on to new sentences. At the same time, they must monitor their word recognition to make sure that the words activated in their minds fit with the meaning of the context. In addition, they must link new information to what they have already read, as well as to their background knowledge, and use this to anticipate forthcoming information. When one stops to take stock of all the processes that readers perform when they read and comprehend text, one is reminded how amazing the act of reading is and how much there is for beginners to learn." — Including WRITING and SPELLING!!

Submitted by Kenda L. Hammer, M.Ed.,

Early Literacy Specialist Fox Chapel Area School District Family Literacy CenterJuly 24, 2009–Spelling Interventions Response for CASANA

Tuesday, July 14, 2009

Response from Sharon Gretz, M.Ed., Founder & Executive Director of CASANA:"No, I would not consider these behaviors to be "part of" childhood apraxia of speech. They would be more common as behaviors in children diagnosed on the autism spectrum or with significant cognitive disabilites or sensory disabilities. However, there are children without autism or severe cognitive delay who exhibit what are called motor stereotypies or complex motor stereotypies. In a nutshell, the motor stereotypies usually involve hand or wrist movements that are easily stopped when the child is cued or distracted to a new task. I am not a medical doctor so you would need to investigate this with a professional such as a developmental pediatrician. Here is a good article on the complex motor stereotypies:http://findarticles.com/p/articles/mi_hb4345/is_10_34/ai_n29321368/ "

Response from Dr. Kathy Jakielski:"Autism and Childhood Apraxia of Speech are different disorders, although some children may have both. For this question it would be so dependent on which "autistic-like symptoms" are present. For example, if a child clearly wants/enjoys interpersonal interaction but is reticent to interact because of a lack of success getting others to understand due to a speech motor disorder like CAS, that is one thing. In that instance, it is likely that they will interact more successfully and willingly as intelligibility improves. However, if a child actually does have autism or significant "autistic-like symptoms" and apraxia, then EACH part of the child's diagnosis truly needs worked on it and of itself. There is no guarantee that symptoms of autism will be eliminated solely with improved speech intelligibility. It is likely therapy will also involve more than speech therapy and work on things such as social relatedness, language, sensory defensiveness, possibly behavior, etc."

Thursday, July 9, 2009

We are at the National Apraxia Conference and spent some time asking one of our speakers, Dr. Kathy Jakielski several questions from parents on the Apraxia-KIDS website.Question:In a Child that presents with both oral and verbal apraxia, what is more important to treat first, the oral or the verbal apraxia?"If the oral apraxia is such that it is affecting a child's feeding or nutrition, then certainly that should be addressed right away! I would treat the feeding issues in a feeding context. If closing lips to drink is an issue due to oral apraxia, then practicing drinking with a cup (the actual task) would, in my mind, be appropriate. The child should practice doing whatever "oral" skill is needed vs. unrelated oral movements. The same is true of speech apraxia. Speech apraxia should also be treated by working on actual speech. One does not get "treated" before the other. If there is no "functional" problem that the child experiences from the oral apraxia, then working intensively just on speech would be the direction that I would take. I would always be working on the speech, not "waiting. It is not a question of which one would be first then next."

Monday, July 6, 2009

[By Natalee Landers, an essay as part of CASANA's Parent Scholarship Program for the 2009 National Conference on Childhood Apraxia of Speech]

I am the mother of three wonderful children. My step- daughter, Ashley is 13 years old and my son, Zachary is five. We also have a three year old daughter named Madison who was diagnosed with Apraxia last year. Her three years have been full of smiles but also many struggles. Within the last 18 months, our beautiful daughter Madison has started to exhibit signs of a neurological problem,to a recent diagnosis of Apraxia. Our family is determined to do everything we can to help her. Unfortunately or fortunately, our views of family and our child havealso significantly changed.

We had dreams of Madison breezing through her childhood, finishing high school, graduating college and walking down that aisle. Yes, these are the grand dreams all parents have, certainly without thinking about the day-to-day problems that may enter that “pretty” picture. Needless to say, when Madison did not start to babble like her siblings, I thought, “Um...well, she did have a traumatic birth and has been coddled more than her brother since I have gotten to stay home with her.." so I put the thoughts off. Then when she started to have trouble walking and not saying mama when her peers did, I realized that something was not “right.” I realized we needed to see a doctor, and this started the endless worrying, crying at all times of the day and hoping beyond hope that I was that over-protective mother that her pediatrician called me.

We started seeing various doctors and continued to hold out hope that they would find “something” that would tell us what was wrong with Maddie. Over the last 18 months she has had three MRIs, various cat scans, an x-ray/swallow test, early intervention testing (with no results the first time around), a 30% hearing loss (not bulging ear drums as another doctor reported)and sixseizures. Finally, the doctors have said, “There is a problem neurologically (delayed myelin) and we do not know what has caused it but with good services she should be just fine. We donotwant to label her just yet, she is too young.” Needless to say the turmoil of not knowing and the waiting has been the toughest on our family. Some days are harder than others. I try to stay positive but often times it is too much to process without getting overwhelmed.

After riding the roller coaster of emotions and searching aimlessly for answers I ran across a website that dealt with Dysarthia and Apraxia. Reading the text, I knew I had uncovered what our baby girl might have. The doctors agree it could be Apraxia, but they don’t want to “label’ her too early. We have been told that she does have a speech disorder instead of a delay as we were toldoriginally. The doctors said that Maddie should be getting intensive speech therapy. My husband and I walked out of that appointment happyand relieved that we finally had something concrete on which to grasp but at a loss for what should we do next. So we put our son, Zachary a bundle of energy, into a threehoura day enrichment child development program so I can devote my time and energy to therapy for Madison. I struggle with the fact that the majority of my day is spent “in therapy” with Madison. Am I taking too much time away from other children? My sonis only five and still needs me and if Madison where healthy than Zachary would stillbe at home with me?” In the same vein, I think he is healthy and developing normally, so he will be just fine....right?

Currently, we see Madison as a child with so much spunk and personality. She is bright and curious about the world around her. She loves everyone and her two big dogs. What tears at my heart on a daily basis is she is trying sooooo hard to communicate. She still grunts and points things that she sees or wants. I no longer keep track of the words or phrases she has used or is currently saying. She is so exuberant when she sees our neighbors that she falls to the ground laughing or runs from them, instead of saying a simple “hi.” She loves to play with her peers if only she could say, “Hi, play with me.” Instead she pushes, shoves or pulls them. Seeing her trying to form words and not being able to do it destroys me and her dad, but we keep going. Zachary has even started to talk for Maddie. I notice when she is trying hard to say something in the car and I can’t see her face or look in the direction of what she is pointing at Zachary will inform me of what she is pointing at or talking about. Her frustration level in just this past month has reached an all time height. She has started to pull her hair out. That was horrendous and frustrating. I just want to make it all better. I have gotten her to clap her hands instead and tell me “mad, mad, mad” although for her it sounds more like “maaa, maaa.”

We donot want to worry about her future and what it could belike. Will she ever talk? Will she be able to interact “normally’ with her peers? Will she have a fulfilling job and future? Are we the right parents for her? Will our other kids be happy with the life we have chosen for our family due to Madison’s medical condition or will they resent us, or worse - her?Being that we are so new to the world of language disorders, I am trying to learn all that I can so I can not only help Madison but educate my family on how our lives will be forever changed by childhood apraxia.

Last June, we were fortunate enough to move back to the United States. Madison has had two more seizures since but is making progress. She currently gets speech therapy, physical therapy, occupational therapy, cranio-sacral therapy, and hippo therapy. It may seem that is a lot of therapy but at this time we are just searching for answers to what will make her language progress. We were fortunate to see a specialist in November 2008 only to be told that Madison didn’t qualify for her program. Not only did she not qualify, but the specialist said that she may be mentally retarded. That stung. We were also told that her oral-motor skills were lacking. I said, "Oral-motor skills what are those and how do we fix that?" So we saw another specialist and for the last six months we have been doing oral motor therapy at home. She is making great progress but for us, it just isn’t enough.

I am concerned with the school system’s lack of knowledge on Apraxia. Even when I gave the team information regarding Apraxia it was meet with a lax attitude. I know that I could become a better "educator", but I am still learning about this disorder.

We are still fighting the battle of how much speech therapy is enough. It took me almost six months to convince our insurance company that she needed intense speech therapy. I had the two facilities pick out and times ready to go; only to be told by the insurance company they would only pay for one facility. So we had work our way in that system. Madison has been getting about 4 days a week of speech therapy and wouldn’t you know it the hospital is NOW instituting policy that they will only see children 1x a week...2x max. I have talked them into waiting until the end of the summer to determine if that is the best plan for Madison. What is so frustrating about all of this is that they see her progress and know that she has apraxia but continue to tell me that the research isn’t there to support intensive therapy. I know they are wrong I see the difference it has made but I don’t have the facts to fight them ... YET!

The future is still scary and unknown. I would have to say that is part of the problem. It feels like Apraxia is a "Word of the Month" disorder and nobody can tell me what her future looks like. It feels as if Apraxia is what autism was like 10 years ago. I feel so helpless at times and realize that the only way to feel “in control” is through education. On my good days I realize that my background in education was meant for a purpose. Even though I received my degree back in 1995 I think it prepared me for what will lay ahead. It at least gave me the “little” bit of knowledge of how the school system works. However, with knowing what I know, I also know when to say, “HELP” I do not know what I am dealing with.

To give my daughter the future she deserves and to help my family navigate this unfamiliar and overwhelming territory, I need to continue educate myself first. Attending CASANA's National Childhood Apraxia of Speech conference would provide this opportunity—an opportunity that would be life-changing for Madisonand my entire family.

Friday, July 3, 2009

[by Karen Buescher, an essay for CASANA's Parent Scholarship Application for the 2009 National Conference on Childhood Apraxia of Speech]

Zack is 3 years old and was just recently diagnosed with mild oral apraxia and moderate CAS. Zack was born healthy with no complications at birth. All developmental milestones were met at the appropriate age except for speech and language. Zack was always a quiet baby and would easily entertain himself with play. At 15 months of age, he said his first word, "duck". However, he only said that for a few months and still to this day cannot say "duck". I did not realize that he was not developing speech like he should. See, not only am I Zack's mom, but I am also a speech therapist. One thing that I have learned from Zack having speech delay is that it is sure hard to separate being a mom and being a speech therapist. Don't get me wrong, knowledge is good; however, that knowledge can lead you to over diagnose your child so many times.

As I stated earlier, I am a speech therapist; a speech therapist who has limited knowledge about CAS. Many people take for granted that since I am a speech therapist, I should have known what to do to make my own son talk better. In response, I try to compare speech therapists to a doctor that specializes in one certain area. For example, if you are having chest pains, your family doctor may refer to a cardiologist. In the same token, if your child has apraxia of speech, you look for a speech therapist who has knowledge about apraxia of speech. Zack's dad, my husband has less knowledge than me. I try my best to explain speech terms to him but he has the look of deer in the headlights. The fact that we have little knowledge is going to change since we will be advocating for and assisting Zack to receive the services that he needs to improve his speech.

Zack is affected by CAS by not having his speech understood and he gives up easily. I am sure that Zack would love to speak to anyone and have his message understood without having to repeat himself numerous times. Zack becomes frustrated with talking and many times will stop trying to convey his thought or message. Fortunately for Zack, I can usually understand what he is trying to say. However, I cannot always be with him so I have to give Zack credit because he has learned other ways to communicate. He will use gestures or take you to what he is talking about. Also recently I have noticed that Zack is saying, "I can't do that." Of course he says it as "I ant U dat." This response is given frequently when we are practicing sounds or words. It absolutely breaks my heart to hear my little boy give up so easily. The one positive that I keep holding onto is that Zack has a great personality that makes him so fun to be around. I am hopeful that his personality will help others overlook his speech problems.

Zack has not only figured out how to get his message across, but also has figured out that if he plays alone, he will not have to talk to others. Many times when around other children, Zack will go and play by himself. Again, it breaks my heart to see my little boy playing by himself when other children are around. Hopefully, with time, his speech will improve and so will his desire to play with others.

As for the affect for us, his parents, we are relieved to have a diagnosis. Yes, it was hard at first to accept the diagnosis of CAS. one of the many hopes and dreams that all parents have for their children is to experience healthy, normal development. Then when we realized that our child was not developing speech sounds and talking like he should, we thought finding a diagnosis would explain why. Well, the diagnosis did help explain why; however, now we have many more questions and concerns. Many of these questions are about his future since he will be starting preschool in the fall. Will the other kids understand him? Will he be made fun of because he does not talk like the other children? Will he lose his happy go lucky personality that makes him so much fun to be around? So many unanswered questions that only time will answer.

As human beings, we take so many things for granted. The one thing that we will never take for granted is being able to have a conversation with Zack. We look forward to the day when we can sit down as a family and talk about our day. Currently, we can ask Zack about his day by asking him simple yes/no questions so that he does not get frustrated with his response. We will completely cherish the day when Zack can tell us what he did hopefully without having to repeat himself in order to be understood.

Thursday, July 2, 2009

There are 3 in our family: John (dad), Lisa (mom) and Patrick. Patrick is a wonderfully bright and comical 9 year old. He's cute, a bit chunky, and tries to be the class clown. Oh...he's also severely and globally apraxic.

How does Childhood Apraxia of Speech affect our lives? How doesn't it? Patrick's apraxia has reshaped our lives forever. We know no other life than "apraxia" and how it has consumed the three of us.

We have met people and have gone places that we never knew existed. We have heard stories of children and their illnesses that we never knew about, nor thought imaginable. Each and every waiting room that we've sat in held some new type of horror story that we were glad we didn't have. Every hospital overnight test brought about another tragic story of "the child in the room down the hall." That night we prayed for "the child in the room down the hall." We were hoping the light of dawn would greet that other child and that we wouldn't hear family members sobbing.

We have slowed our life and lifestyle from an east coast minute to a creeping, methodical mid-western crawl. We have stopped and smelled the flowers at every step along the way and even had to take pictures of them so we would remember what they were called later. We refer to our son as our "$100,000 kid" - this being the amount of money his therapies (and doctors) would cost us by the time he's hit the age that he is currently. I guess, like our nation's deficit, we'll have to revise that number upward now.

We often wonder if we've missed out on so many things that we should have seen our son do already or if we're still stuck in the midst of his "toddlerhood." He says he has a best friend in school ... poor Braden just wants to be a normal kid and run, jump, and play. Patrick just wants Braden to help him run, jump, and play. We've watched other kids grow and develop. We've also watched the look in our son's eyes. We sometimes see a shiny bright light in his eyes, but, at times, we also see a sad, non-responsive look when he just knows he cannot do it like everyone else can.

We've lost so many things. Patrick dreams of grandparents because we no longer see his. Most of them have passed away, but those remaining have disowned us. We'll never be able to explain to him that it's because he's not "perfect" to them. Our adopted Apraxia-KIDS Listserv is now our extended family. They are "our people." Our people that have worn our moccasins; some traveling even farther in them than we have.

We are so lucky. We only have apraxia. We only have sensory issues. Our son is alive and is gaining strength in his arms, legs, speech, and social skills. We aren't the other parents that we spoke to in all of those waiting rooms. We aren't the other parents that have horror illnesses or children with shortened life expectancies. We haven't had to deal with what they have endured.

The best part of our son's apraxia is learning how strong our own personal fortitude can be. We watch. We coach. We sing praises at every chance we can - to him and for him. The tears that we shed are sometimes overshadowed by smiles of joy when he's able to answer a stranger's question. We're proud that he's really trying to wipe his own butt because he really wants a puppy. We know he really just wants a friend and that puppy would be his friend. A friend that would play with him and understand every word.

Where would we be today if our son was "perfect"? We cannot even imagine. We really, truly cannot even imagine. How hasn't Patrick's apraxia affected and changed his life and our lives? After all, what would we have possibly done with that $100,000 anyway?!

Wednesday, July 1, 2009

[by Tom K., essay as part of application for CASANA's Parent Scholarship Program for the 2009 National Conference on Childhood Apraxia of Speech]

My wife and I are the proud parents of a six year old daughter named Julia and she has been diagnosed with Speech Apraxia. Julia came into our world as a beautiful baby girl just a few days before the 4th of July in 2002. As Julia grew and became a toddler it became very evident that she was not talking and when she did try to utter words they were very difficult for us to understand. At this point we had plenty of input from parents, grandparents and friends. They all had advice as to why Julia was not talking: Julia was fine, she would talk when she was good and ready. Some advice even went as far to tell us that their children didn’t talk for the first time until they were three or four years of age. In order for Julia to communicate with us during these early stages she would point, jump and make utterances.

I vividly recall a trip to Disney World we took in 2005; at this point Julia was three years of age. We had a great time at Disney World’s Magic Kingdom and when it came time for the “Electric Light Parade” Julia wanted a Mickey Mouse balloon, because we could not understand Julia’s request or realize what she was pointing at in a crowd of people, needless to say the day at Disney ended in tears from Julia. For the very first time we witnessed what a difficult time Julia had communicating even with us.

While we watched and hoped for Julia’s speech to progress I was transferred to as part of a job relocation. This was a major change in our lives. Both my wife and I had never lived away from our hometown but we made the decision to move our family of five. Little did we know that this decision would put us on the path to Julia’s diagnose of Speech Apraxia.

As we settled into our new home, Julia’s speech continued to struggle. My wife Tracie knew that Julia’s speech was not progressing as it should and she took matters into her own hands. My wife contacted the office in our county that dealt with special needs children. After six months of in home visits and a special program at the Area Education Agency (AEA), Julia learned sign language and she was able to communicate a little better. Because the AEA is a state run organization they were unable to give us a diagnosis. This was not good enough for us and so a battery of tests began. Trips to the neurologist, MRI, sleep test, tonsils removed and still the doctors could not tell us what was wrong. We then took Julia to a nearby city for another round of tests in which she was diagnosed with Speech Apraxia.

My wife, who has championed to help Julia continue to strive even though she had Speech Apraxia, would not settle. She knew that other then speech, Julia was developing as all other children her age. Through the AEA, Julia was able to attend preschool through the public school system and received specialized instruction for speech therapy. Julia’s Speech Pathologist Mary Beth was truly an angel in Julia’s life. Mary Beth took great interest in Julia’s disability and worked tirelessly to try and find other resources that we could take advantage of while school was out of session or even after school hours. We could see the dedication that was shown by Mary Beth and the path was now set for Julia to get the help she desperately needed. Mary Beth helped us get a scholarship through the hospital so Julia could obtain extra services in the summer.

When Julia entered Kindergarten we decided to send her to Catholic school. Her new speech therapist was not as enthusiastic about Julia or her condition, and we once again hit a brick wall. The difference this time was that Julia was beginning to know the difference as well. She was having difficulty communicating with her classmates and at time was made fun of. I can truly say that this was one of the hardest times in mine and my wife’s life. Although Mary Beth was no longer working with Julia, my wife called and Mary Beth referred us to a specialized program at a nearby college. Mary Beth was not sure they would have openings but it was worth a shot. The college offered a program through their Communication Sciences and Disorders Department. It was here that we were put in contact with a professor who was an apraxia expert, after my wife’s first phone call she put down the phone and cried. Someone understood and could explain what was going on; we felt hope! This program and the individuals associated with it have been the most significant and inspirational aspects of Julia’s treatment for Speech Apraxia.

Julia attends classes at the college three days a week for twenty minute sessions with a student at the college who is studying to work in the field of Speech Pathology. The program is closely monitored by the professional staff and we and everyone who knows Julia have witnessed a transformation. Julia’s ability to communicate has improved dramatically in the past year and a half. We know now that God has played a role in this journey. If I had not taken the job transfer we would have never found Mary Beth and we would have never found out about this wonderful program at the college. It is expensive to send Julia and I have taken on a second job in order to help defer the costs associated with the program, but no amount of money can be placed on what we have received and the progress our daughter has made. In fact we now joke that Julia is never quiet.

Recently we were asked if we would like to participate in an apraxia research study. We were more than honored to have been asked to participate in this study so that families like ours might some day gain a better understanding of this disability. When ever we are asked to participate we say “YES”! We will do what ever it takes to help others by getting the word out. The college professor and the student's in the program have given us and our little girl the ability to communicate and for that we are grateful. We know we have a long journey ahead of us with Julia but we are also very much appreciative of the progress made to date.

Tuesday, June 30, 2009

[by Jill, as part of CASANA'S Parent Scholarship application for the 2009 National Conference on Childhood Apraxia of Speech Conference]

Before my son was born, I was an enthusiastic middle school teacher in a tough part of Chicago. I was dedicated to struggling readers, writers, and mathematicians. But I drew the line at "special education." That wasn't my territory, not because I didn't care, but because I didn't know how to really participate. Back then, special education and general education were two very separate worlds.

Then I had my son and slowly over time, my world view changed both professionally and most dramatically, personally. Evan was perfect and beautiful and filled my heart with indescribable joy. I never dreamt that he would encounter challenges beyond the normal life experiences. I was a first-time mom, living in a rural area, with no extended family to "hang out" with. As I took my little baby in for his well-child visits, I would look at the poster on the wall of the exam room. It outlined language development for the typical child, with all the important milestones. I noticed that Evan was not doing most of the things he was supposed to be doing. During his nine-month checkup, I expressed my concerns to his pediatrician. He said, "Let's wait and see. Boys tend to lag behind girls in development." Everyone else echoed that same feeling, some people even mentioned how Einstein didn't talk until he was four. Looking back, his minimal vocalizations, lack of tongue movement, etc. were so obviously different than the norm. I regret that no one ever seemed alarmed, not that I feel that intervention at this point would have made any difference.

At each doctor visit thereafter, I expressed my concern about his language development and how it was not at all comparable with what was listed on the chart. Finally, at 18 months, the pediatrician recommended that I contact the local Birth - 3 program for an evaluation. The results of the evaluation were quite a shock. I thought he had delays in language development, but in fact, their results indicated that he was delayed in 4 out of 5 categories! Hearing these results was the beginning of a long roller coaster ride of emotions and advocacy that continues today as my son progresses through elementary school.

Progress in speech development has been painstakingly slow. This slow progress has me on a mission to find out how I can help my son. At first I thought he was just slow in learning to talk. A gap began to grow between his expressive and receptive language. Eventually, he was diagnosed with Childhood Apraxia of Speech. As we progressed through therapy and Early Childhood programs, I learned that I had to be the "case manager" for my child. This affects my life in many ways: I invest a lot of time in searching for appropriate services, making phone calls, driving to therapy appointments, meeting with school personnel, and educating myself and others on this mysterious condition known as apraxia.

Professionally I have, of course, become more interested in special education. I'm trying to figure out this inclusion thing - how to make it work for everyone (not an easy task). I also got involved in an interdisciplinary leadership training program that focuses on children with developmental disabilities and their families. This has, among other things, allowed me to attend national advocacy conferences.

Personally, I have become a parent advocate. I am proactive in educating the community about apraxia. I spent man hours in my son's classroom, helping his classmates understand why it is that my son has difficulty talking. At first they would say to me, "Evan can't talk." I would respond, "No, Evan can talk, it's just harder for him." I was glad I was able to be there to discourage that perception of him. I never wanted Evan to hear someone say that he can't talk.

As a teacher, I am now a big believer in the potential of inclusive education. While in kindergarten, my son's language grew more than ever before. Being around same-age peers that not only model language, but also engage Evan in academics and social activities is invaluable. Our school is somewhat unique in that it is very multicultural. When talking about diversity, most people talk about race, culture, language, and religion. We often neglect to include the abundant diversity in ability. I know that Evan's classmates have benefited from his presence as I've been fortunate to spend a lot of time with his classmates and their parents. Educators need to take on the responsibility of providing children with the opportunity to accept and celebrate the many differences in our society. We adults need to nurture and value the compassion that exists in young children. Wouldn't our world be an amazing place if we valued compassion as much as we do competition?

How does Childhood Apraxia of Speech affect my son? I'm not really sure. At this point, he can not express to me what is in his heart. I don't really, really know how he sees himself and I can't infer what his self-concept is. I don't know his own unique perspective on the world. He does know that he is "different" and that few people understand what he says. Right now, his social nature is an asset as he is persistent in forming friendships with other children. He's also a relatively happy child and doesn't get explosive in his frustration. He finds many ways to communicate, using gestures and words. I do think that his challenges with apraxia have allowed him to develop an incredibly empathetic spirit. When he sees a child cry, he puts his arm around that child. In silent gestures, he communicates that he cares and understands.

How does Childhood Apraxia of Speech affect me? Personally, I'm still riding an emotional roller coaster. I thought by now I would be more "together", that I wouldn't get sad at unexpected times. As I write this essay, I get tearful reflecting on the fact that I don't know anything about the inner life of my child. I get angry that he has such a huge challenge that affects just about every aspect of his life. I get frustrated that I can't ever do enough to help him or that I can't make it "go away." I get stressed over the behavioral challenges that arise. But I also get energized when Evan makes gains in the words he says. I celebrate even the littlest things that other parents take for granted. But mostly, when I tuck my son into bed every night, my heart fills with a feeling of love that I never knew before he came into my world.

Monday, June 29, 2009

The words “I do” can mean something different to so many people. In many it may spark the image of a bride and groom. For people who have children with Childhood Apraxia of Speech, it may be a phrase that their child is able to say clearly after years of speech therapy. When I was pregnant with our son, I remember watching "Good Morning America" during National Autism Awareness Week and being struck by the ratio of boys compared to girls with Autism. I felt so scared to have a boy.

Andy was born a healthy boy, weighing in at 7 pounds 15 ounces, just like his sister. At 15 months, Andy said “bye bye” and we were so excited, I remember that day as clear as it was yesterday. That was the last time I’ve heard it said that clearly. Looking back I also recall how excited we had to get him before he could get the words out of his mouth. Things seemed to progress normally and then we noticed that Andy’s walking was unstable and he kept falling. We came to learn that he was Hypotonic, which means basically low muscle tone. But what people need to understand is how much being hypotonic can affect your entire body.

My husband and I yearned to hear the words “mommy and daddy” and they didn’t come. Andy was able to say a few words such as; truck, cap, sock and shoe. But eventually we no longer heard those. We watched him play and knew he understood what we told him but he just seemed to babble back at us. People thought it was cute and kept saying he’ll talk when he’s ready. I guess in my heart I knew it was more than that. We turned to our pediatrician for help and were referred to speech therapy. After meeting Andy’s speech therapist, Anne,I knew she was a fit for him. He seemed to bond with her and she helped us understand exactly what Apraxia could mean. We met for two or three sessions to have Andy evaluated. The diagnosis was severe Childhood Apraxia of Speech, also one of the most severe Anne has seen. Basically here’s where our journey begins.

Our first born, Madeline, I am convinced was born talking and hasn’t stopped since then. I began to notice that Andy “talked” as much but we just didn’t know what he was saying. Out of frustration, Andy began to bite and hit. Here’s this little boy trying to get us to understand and we just weren’t able to. It was one horrible fit after another. My daughter got the majority of the biting which still makes me feel horrible. I believe in Andy’s brain, that when he was babbling to us he was hearing what he wanted to say but what came out of his mouth was completely different. I would dread taking him places because he was like a superball in a room and then add the fact that he wasn’t able to tell me what he wanted.

When Andy was about 18 months old, I kept waiting to hear him call me mommy. If he was very upset or worked up about something he would call out mama. People constantly said, "Don’t worry; he’ll talk when he’s ready." What we didn’t know was that Andy was ready to talk but physically he wasn’t able to. When I’ve told people that Andy is able to understand just about everything you say; he’s just unable to communicate back with his voice. I’ll be signing a few things to Andy and I have had people tell me, "Well he looks normal." That’s when I tell them that Apraxia doesn’t have a face. It truly affects more than an individual person. We try to make it an open topic within our lives. A few times when Andy has had meltdowns and I don’t understand why, I’ve had people look at me and stare. On the flipside, being so open has helped two of my friends from high school get help for their children.

Everybody wants the best for their children. But when one of your children has a problem the balance can be harder to maintain. Our daughter is very aware of her brother’s lack of speech, what she never forgets is that he understands almost everything people say. Having a son that has a special need has made my husband and me more aware of everything. When I tell people about Andy I never say there’s something “wrong” with him. There’s nothing wrong about him, he has trouble forming words is all I say.

Having a child with apraxia of speech has made me see the genuine goodness that people have and it’s also shown me the epitome of ignorance in society. For as difficult as a single day could be, we don’t know any other way. Honestly, I can’t even imagine what it would be like to have two children talking like my daughter does. We laugh about it and make jokes, but we pray for it every day.

Andy recently celebrated his fourth birthday and it was special. He was able to blow out his birthday candles! It was very exciting for my husband and I, as well as, Andy. If you asked me at age 22 would I ever cry at the sight of a boy blowing out a birthday candle, I’d probably tell you no. It was great!

Nobody ever really knows what life brings. I’m fascinated by the way children are taught in speech therapy, all the different things to help lessen the burden of Apraxia on a child. Watching Andy go from Speech to Occupational Therapy or Physical Therapy on a Monday afternoon just amazes. Some days there’s drastic improvement and other days, it seems like he’s regressed. At home, most of Andy’s play is based on his therapies. I don’t know many 4 year olds that hang from a chin up bar in the basement for fun. We often put small objects in rice to help with Andy’s sensory issues. I always say, rice is the new Play-doh! It’s funny to see the expression people get when they come over in the winter and we’re blowing bubbles.

I’ve declared this the summer of fun! After spending almost one year of doctor appointments ruling out Muscular Dystrophy, cardiac problems, neurological issues, genetic issues, vision and hearing problems, I think my family deserves it. Rather than running to a doctor's appointment, I try to make it a few hours at a park. One day my hope is that I’m standing watching my kids playing and Andy will stand up and say something like, "How am I doing mommy?" I also wonder how many things Andy will be able to tell me that his sister does and blames him! Either way, I look forward to both!

About Apraxia-KIDS & CASANA

Apraxia-KIDS is a program of CASANA (The Childhood Apraxia of Speech Association of North America). CASANA is the only national 501(c)3 nonprofit organization dedicated EXCLUSIVELY to children with apraxia of speech and their families